There are 8 500 people living with HIV in Sweden. Everyone has their own story. Here we have collected some of them.
I originally wanted to be a dance band singer.
I've been suffering from cancer for a long time and I think it's a consequence of HIV. But I have been operated on and everything has been removed.
I am quite active and involved in two different amateur theater groups. In one, I am responsible for rehearsing the music for a journey based on melodies from the beginning of the 20th century to the present day. It's fun, but I can also get quite annoyed sometimes. There are too many people who want to be involved and decide. I would rather have a finished script and a director who tells me what to do. But when I've worked at school and put on musicals with the kids, they have of course been involved in deciding roles and other things.
Once upon a time I went to vocational school and trained as a decorator, which I never became. Instead, I became a cartographer and spent ten years in the building office in Simrishamn, where I was not happy. I preferred to sing and dance. Actually, I wanted to be a dance band singer, but I didn't dare at that time, in the 70s.
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KENT 70+
Text Lars Åberg / Photo Martine Castoriano
From the book Leva livet - att åldras med hiv
I have been ill with cancer for a long time and I think it is a consequential disease that I have got from HIV. But I have had surgery and everything has been removed.I am quite active and involved in two different amateur theater groups. In one, I am responsible for rehearsing the music for a journey based on melodies from the beginning of the 20th century to the present day. It's fun, but I can also get quite annoyed sometimes. There are too many people who want to be involved and decide. I would rather have a finished script and a director who tells me what to do. But when I've worked at school and put on musicals with the kids, they have of course been involved in deciding roles and other things.
Once upon a time I went to vocational school and trained as a decorator, which I never became. Instead, I became a cartographer and spent ten years in the building office in Simrishamn, where I was not happy. I preferred to sing and dance. Actually, I wanted to be a dance band singer, but I didn't dare to do that at the time, in the 70's. Then one day I saw an advertisement to apply for the music program at Svalöv Folk High School. I got in and there I met a completely different style than what I was used to. I used to dance to dance bands and had friends who had a drink or two. At the school, it was a bit fuzzy and it smelled of hashish. At the same time, what I did was so much fun that it made up for it.
Afterwards, I applied for the rhythm course at the Academy of Music, where I also obtained a regular music teacher's degree. Since then I've used a lot of rhythm in my teaching, because it's good for the kids to move around. In Lomma I was given a music room without chairs, with free floor space. I was mostly in the lower and middle school and we danced and did different movements.
In the early 2000s, I started tapering off. My brain wasn't working properly. I could sit with my friends and suddenly I was talking about something completely different. I felt tired and couldn't do anything. Four months of my life ended up disappearing, I couldn't remember anything between November 2011 and February 2012. I ate almost nothing. I thought that death was waiting for me.
It turned out that I had a huge amount of virus on my brain. I ended up in the infection clinic and stayed there for a week without remembering anything about it. Then I woke up in a nursing home. They told me that I had HIV. My first thought was that I didn't want to live. I felt dirty and infected with the plague. It was so horrible.
At the nursing home, I was placed among the senile dementia patients. At night you could hear people screaming and being scared to death. I can't understand why I ended up there after being diagnosed with HIV. I should be somewhere else. The staff at the nursing home never spoke to me. They only asked me if I had showered.
I think I have had HIV for a very long time. There are three men with whom I have been involved in this way since 1984. I know that one of them is dead, the other I have met and the third has moved away and I know nothing about him.
I have always lived alone. I have only lived with my cat. I have lived the wrong life. I pretended to be someone else. I have had the privilege of being a dancer. In Simrishamn I went out with friends who were not gay. When we were out dancing, it was with girls. I've never danced with a guy. I don't want to. So you're a bit conflicted...
My life started when I was 55 years old, that's when I became Kenth Fredriksson. Then I told my principal that I was gay. I could no longer go to work. I felt so bad about pretending. I had done that for many years.
I didn't want to be gay, so I didn't admit it to myself. Actually, I don't want to be now either, but I have accepted it. I would rather be straight, but not to be married to a woman and have children. That's not what it's about. I would just like to be a bit more male than I am.
Now I don't want to go backwards, I want to go forwards. I'm in a group where I get to sing Povel Ramel songs and lead sing-alongs. I go for a walk in the park every day. I go cycling and I paint paintings and small postcards.
I grew up in the countryside, in a small village, and I was quite bullied at school for playing with girls. I threw a ball and jumped hurdles and ropes when the boys were playing football. No one wanted me on their team. I was called Miss Fredriksson. Those who were a little older were horrible to me. In my teens it was tough. I was with a girl for a year and a half. We rode in the back of cars and kissed, but it was like a cover-up. That doesn't make sense today. I was interested in her boyfriend who was in the front seat. I discovered this in sixth grade when I didn't want to shower with the boys.
I was over 30 before I had sex. That's pretty late. I was 33 and had graduated from the Academy of Music. Then you start looking, and where do you look? Well, in parks. And how much fun is that?
There are people who tell me that I have had AIDS. No, I haven't. AIDS is a deadly disease, HIV is a deadly infection that has not broken out into any disease. It can be reduced because we have such good medicines. I only take one tablet a day, in 2012 I took seven. I have never felt any side effects.
Not all people are aware of HIV today. Many young people may say: "So what, there are antiretroviral drugs." But it is much better that you protect yourself. I have been to lectures and events where I have talked to young girls and asked them if they know how HIV is transmitted. "Yes, you can't kiss," said one of them very recently. She was in high school. It still seems like when I was in school and you got to see the human body in cross-section and that was it.
When you get older, first of all, you have to be treated as you were when you were younger. I find that people in nursing homes are so inactive, they just sit and stare, they don't talk to each other. It's awful. I never want to live in a place where there are no activities. I would go under. When I was at the Academy of Music, a friend and I spent a summer traveling around different homes, singing and playing. That sort of thing has been withdrawn now, it's not considered so important.
If I were 20 years old now, I would do what I do and then some. I would at least try being in a dance band. I wouldn't sneak around. That's the stupidest thing I've ever done. I love being the center of attention. It's something that I've suppressed for so many years. But I was treated more badly before I told you. I got a lot of flak then, but I don't get that now.
I am happy for the five years as a regular mother of small children.
Right after the second delivery, I started taking medication. It has worked well. Since I have some resistance, I use the old-fashioned cocktail, including Kaletra and Stocrin. These are interesting drugs in that you dream a lot and hallucinate. I am active at night!
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KVINNA 50+
Text Lars Åberg / Photo Martine Castoriano
From the book Leva livet - att åldras med hiv (Living Life - Aging with HIV ).I was 16 weeks pregnant when I found out I was HIV positive. I was completely unprepared. My husband tested himself continuously in his work, so he must have been newly infected without knowing it when we fell in love.
There were newly planted birch trees outside the health center that day and they were immediately turned upside down. I still have that image in my mind to this day. On July 10, 1991, they were upside down. When I drive by now, I usually look at those birches and think: haha, now they are on the right keel!
A midwife gave me the news and broke confidentiality by calling in a colleague. She also called my parents' home on a Friday and told my mother that there was something strange about my blood tests. Not wanting to worry her, I tried to explain it away by saying that it was probably malaria and that they didn't know what it looked like.
When I went there on Monday, my worst fears were realized. I expected that they would isolate me and that I would be forced to have an abortion and be locked up. That was my idea of how to deal with infected people.
Do your children have HIV?
No. They are healthy. But you don't know for sure until a year and a half later. The first girl had a normal delivery in 1991. Girl number two was born in 1996 and we were able to prepare for that; I was on Retrovir for the last three months of the pregnancy and then she was also on it for a while. We had a caesarean section as part of a research study to minimize the risk of transmission of infection.I had two pregnancies, the second one five years into the disease. It was a difficult marriage and a lot of psychological pressure, an uncertain existence in general. My husband didn't take it well and out of respect for him I didn't tell anyone but my mother. Maybe it was a burden to have to know it, but I thought that she, my mother, would be able to handle it.
Did she?
She took it much like I did. We're alike in that way. She kept a good face in front of my siblings. It's very unlike me to be silent about anything, but we were silent for five years. In 1996, during my second pregnancy, I told my younger sister and that's when the shit hit the fan. I'm so incredibly happy for the five years before that, when I was able to be an ordinary, normal mother of young children. I could live my double life, with my HIV bubble and my mom bubble and my professional role.One should not forget that at that time there was not much hope. I started subscribing to the weekly magazine Time, which had many articles on HIV from an American perspective. That's how I found out that drugs were starting to appear.
I was involved in some research studies where I was first given a placebo. After that I got to try Retrovir. I was informed about a lot of details, but I didn't really want to know anything. Above all, I didn't want to memorize it. I just wanted to be healthy for as long as possible. I swallowed some nasty pills, which later turned out to have made me resistant to some of the current medications. But it was mostly clinical tests, it felt like there was no time for anything else. There was no time for anything else.
I think I heard then that the average survival time was sixteen years. So I thought that I wouldn't make it to 50. I erased all thoughts of retirement, I no longer thought about finishing my vocational training. In 1991, I said that if I survive for three years, I will be satisfied; I will have followed my daughter so that she can walk and remember me. Getting pregnant the second time was very deliberate. I really wanted to have another child so that my oldest daughter would have a companion from her childhood. Since both her father and I were infected, I thought we would leave her early.
In my situation, I want to find a retirement home where only people who are gay live. I want to be able to talk about sex where they understand my situation. I think more people would like to customize.
When I met my husband, I left home. We became a stable couple from day one. We met when I was in the army. He had his own business and the economy was very good for a while. We built a house that was way too big for us. We put on an oversized gold lamé tuxedo. We're really more the kind of people who sit on the couch and drink tea, but we got involved in the real estate business and when the bubble burst we were left with zero dollars and a big house.
Then we moved to a place in the countryside. Here people were more down to earth. We lived together in the same house for sixteen years, but it was difficult and we had two bankruptcies. The bailiffs have been at the front door. But we paid our debts and kept working.
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KENT 70+
Text Lars Åberg / Photo Martine Castoriano
From the book Leva livet - att åldras med hiv
I have been ill with cancer for a long time and I think it is a consequential disease that I have got from HIV. But I have had surgery and everything has been removed.I am quite active and involved in two different amateur theater groups. In one, I am responsible for rehearsing the music for a journey based on melodies from the beginning of the 20th century to the present day. It's fun, but I can also get quite annoyed sometimes. There are too many people who want to be involved and decide. I would rather have a finished script and a director who tells me what to do. But when I've worked at school and put on musicals with the kids, they have of course been involved in deciding roles and other things.
Once upon a time I went to vocational school and trained as a decorator, which I never became. Instead, I became a cartographer and spent ten years in the building office in Simrishamn, where I was not happy. I preferred to sing and dance. Actually, I wanted to be a dance band singer, but I didn't dare to do that at the time, in the 70's. Then one day I saw an advertisement to apply for the music program at Svalöv Folk High School. I got in and there I met a completely different style than what I was used to. I used to dance to dance bands and had friends who had a drink or two. At the school, it was a bit fuzzy and it smelled of hashish. At the same time, what I did was so much fun that it made up for it.
Afterwards, I applied for the rhythm course at the Academy of Music, where I also obtained a regular music teacher's degree. Since then I've used a lot of rhythm in my teaching, because it's good for the kids to move around. In Lomma I was given a music room without chairs, with free floor space. I was mostly in the lower and middle school and we danced and did different movements.
In the early 2000s, I started tapering off. My brain wasn't working properly. I could sit with my friends and suddenly I was talking about something completely different. I felt tired and couldn't do anything. Four months of my life ended up disappearing, I couldn't remember anything between November 2011 and February 2012. I ate almost nothing. I thought that death was waiting for me.
It turned out that I had a huge amount of virus on my brain. I ended up in the infection clinic and stayed there for a week without remembering anything about it. Then I woke up in a nursing home. They told me that I had HIV. My first thought was that I didn't want to live. I felt dirty and infected with the plague. It was so horrible.
At the nursing home, I was placed among the senile dementia patients. At night you could hear people screaming and being scared to death. I can't understand why I ended up there after being diagnosed with HIV. I should be somewhere else. The staff at the nursing home never spoke to me. They only asked me if I had showered.
I think I have had HIV for a very long time. There are three men with whom I have been involved in this way since 1984. I know that one of them is dead, the other I have met and the third has moved away and I know nothing about him.
I have always lived alone. I have only lived with my cat. I have lived the wrong life. I pretended to be someone else. I have had the privilege of being a dancer. In Simrishamn I went out with friends who were not gay. When we were out dancing, it was with girls. I've never danced with a guy. I don't want to. So you're a bit conflicted...
My life started when I was 55 years old, that's when I became Kenth Fredriksson. Then I told my principal that I was gay. I could no longer go to work. I felt so bad about pretending. I had done that for many years.
I didn't want to be gay, so I didn't admit it to myself. Actually, I don't want to be now either, but I have accepted it. I would rather be straight, but not to be married to a woman and have children. That's not what it's about. I would just like to be a bit more male than I am.
Now I don't want to go backwards, I want to go forwards. I'm in a group where I get to sing Povel Ramel songs and lead sing-alongs. I go for a walk in the park every day. I go cycling and I paint paintings and small postcards.
I grew up in the countryside, in a small village, and I was quite bullied at school for playing with girls. I threw a ball and jumped hurdles and ropes when the boys were playing football. No one wanted me on their team. I was called Miss Fredriksson. Those who were a little older were horrible to me. In my teens it was tough. I was with a girl for a year and a half. We rode in the back of cars and kissed, but it was like a cover-up. That doesn't make sense today. I was interested in her boyfriend who was in the front seat. I discovered this in sixth grade when I didn't want to shower with the boys.
I was over 30 before I had sex. That's pretty late. I was 33 and had graduated from the Academy of Music. Then you start looking, and where do you look? Well, in parks. And how much fun is that?
There are people who tell me that I have had AIDS. No, I haven't. AIDS is a deadly disease, HIV is a deadly infection that has not broken out into any disease. It can be reduced because we have such good medicines. I only take one tablet a day, in 2012 I took seven. I have never felt any side effects.
Not all people are aware of HIV today. Many young people may say: "So what, there are antiretroviral drugs." But it is much better that you protect yourself. I have been to lectures and events where I have talked to young girls and asked them if they know how HIV is transmitted. "Yes, you can't kiss," said one of them very recently. She was in high school. It still seems like when I was in school and you got to see the human body in cross-section and that was it.
When you get older, first of all, you have to be treated as you were when you were younger. I find that people in nursing homes are so inactive, they just sit and stare, they don't talk to each other. It's awful. I never want to live in a place where there are no activities. I would go under. When I was at the Academy of Music, a friend and I spent a summer traveling around different homes, singing and playing. That sort of thing has been withdrawn now, it's not considered so important.
If I were 20 years old now, I would do what I do and then some. I would at least try being in a dance band. I wouldn't sneak around. That's the stupidest thing I've ever done. I love being the center of attention. It's something that I've suppressed for so many years. But I was treated more badly before I told you. I got a lot of flak then, but I don't get that now.